Daughter has rare condition while mother is terminally ill.

At the end of 2014, the Woolfe and Armstrong family of Christchurch were just like any other.

Mum Natasha was working two jobs, her partner Chris Armstrong was working as a joiner and the three kids were going to school.

But in early 2015 their lives changed.

Ms Woolfe, 33, had already begun to notice intermittent bleeding after going to the toilet, but shortly afterwards her then 13-year-old daughter, Jorja, experienced debilitating pain around her ribs.


"They initially thought she had leukaemia, which is why I put myself on the backburner.

"She underwent loads of bone biopsies and marrow biopsies and went through hell and it finally came back with this really rare bone disease which affects one in a million."

That disease is Chronic Recurrent Multifocal Osteomyelitis (CRMO), a condition so rare the family have had trouble finding out much about it.

But once a diagnosis was finally confirmed for Jorja last August, Ms Woolfe got herself to the doctor, only to find she had terminal bowel cancer.

"My bowel was really irregular, I had this feeling that something wasn't right in my body but being a mother you just truck through and keep putting yourself on hold, dealing with your daughter.

"I made doctor's appointments and kept cancelling them, and I finally went and ... they found a 4cm tumour in my bowel, which is quite rare for my age."

In 95 per cent of cases, she said, people with bowel cancer were aged over 50.

"I didn't expect that, I expected irritable bowel or something."

After CT scans, MRI scans and radioactive scans, doctors found the cancer had progressed to about 13 spots on her liver, meaning it was inoperable, leaving her with between six months and two years to live.

That was six months ago and she reckons she's got a lot more time on her side.

Jorja, who attends Papanui High School, is feeling better, but says there are still days when she can't get out of bed.

"At the start it was really hard as well because even if I wanted to do a simple thing like go to the toilet, mum would have to come and help me up because I would be in so much pain.

"But the infusions of medicine that I've been getting have been helping a little bit."

The illness has put a stop to her paper runs and touch rugby games, but at least she's out of hospital.

"I would rather be at school than in hospital."

As for Ms Woolfe, she's prepared to try anything and everything to spend more time with her family.

"A lot of people may not do the alternative stuff, like vitamin C, but if it didn't work at least I can say that I tried everything. I don't want to have regrets."

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